Do any of our community have experience with Emphysema? Any suggestions for best online resources appreciated

Hi Folks,

When Magdalena and I went through her cancer scare and surgery some months ago, we got very good advice here from a number of our community who were old hands with kidney cancer experience either themselves or in their families and shared some invaluable early advice that very much helped pave our way to a smoother process of finding the best help and making good decisions.

I'm just too swamped right now finishing up the next AFIB Report, though thankfully can see the light at the end of the tunnel now, after having yet another detour drop in my lap earlier this week after an urgent call from my brother, and as such it would be a great help if any of you who might have any expertise about the best online resources or support and education sites for progressive Emphysema could share those with me ether in this thread or by PM if you prefer?

Alas, it seems like the Dickson family medical adventure continues on for a while longer. My older brother with whom I've shared a close relationship from day one, had been the very lucky member of our immediate family, up until recently.

He is an extremely fit 70 year old personal trainer for clients over 50 years old in Santa Fe New Mexico with very lean strong body and in top shape over all. His only brush with the medical world, other than a knee surgery from a skiing accident 35 years ago, was a colon surgery for a rupture diverticulitis two years ago from which he made a full recovery,

He has had some asthma issues and occasional bouts of bronchitis in the past, but otherwise his health has been golden while my older sister and I have run the health care gauntlet for much of our adult lives.

In any event, my brother had a serious bronchitis episode in Santa Fe last week that morphed into a crisis and a preliminary diagnosis of suspected 'Alpha 1 Anti-trypsin enzyme deficiency' which predisposes to COPD, but if that diagnosis had been correct at least it would have been more effectively treatable with replacement of the missing enzyme using a special inhaler. But it was not the right diagnosis.

His condition continued to get worse with oxygen saturation below 83 and needing an oxygen tank and, as you might guess, I got a call from him and his wife on Sunday asking for me to do my thing with research help in the medical world to find an expert pulmonary doc to help sort this out, preferably in Houston where our family has strong ties.

Thus, I jumped into full detective mode once again for several days on behalf of my ailing brother and he now has been seen by a highly recommended pulmonary specialist in Houston, though there are no doubt many such excellent pulmonologist in big cities throughout the U.S.

Unfortunately, we learned yesterday that my brother has full blown central emphysema (not sure yet what the distinction implies) though he never smoked at all except for some brief dabbling when in high school. Also, while scanning his lungs they discovered an aortic ascending aneurysm of 4.5cm (preliminary measure) during the first non-contrast Cat scan that was focused on his lungs, not looking at his heart, on Wednesday.

Thus, this morning he had a full contrast CT and echo cardiogram to better define the aneurysm and determine the urgency of any possible surgical intervention that might be required, though he has not gotten the results back yet, though we are obviously keeping our fingers crossed that the new CT/Echo doesn't show an even larger diameter aneurysm than 4.5cm, and no other factors that might cause the Cardiac surgeon to want to intervene at a lower than typical diameter for surgery recommendation... which is often closer to 5.0cm roughly in most scenarios from what I understand.

Anyway, I'm back full tilt now finishing up the last few study summaries on The AFIB Report and and aiming now to finish up by Tuesday and get the report out hopefully by Wednesday as it stands now .. with a little luck and very soon for sure. There isn't much more I can do for him for the moment other than our phone calls, now that he is in the docs hands in Houston and has several more appointments now with a cardiologist and Cardiac surgeon on Monday and Wednesday to figure out the next steps on the aneurysm front.

But any guidance or info about the best emphysema-related websites to help get him started off on the right foot with that aspect of this major shift to his new reality would be a much appreciated should any of you have experience in that area. It's quite a a lot to take in and digest for a man who has been so dedicated to staying as fit as possible as my brother has over the years.

Many thanks.
Shannon



Edited 3 time(s). Last edit at 04/28/2015 10:00PM by Shannon.

Thanks a bunch Dennis and George on my home email and two other readers via PM for the quick response and nice links. They look very informative and are much appreciated and I have bounced them to my brother who asked me to pass along his gratitude as well.

Take care,
Shannon



Edited 2 time(s). Last edit at 04/25/2015 09:58AM by Shannon.

Shannon, I feel for your brother. Both my kids had childhood asthma and our home was like a NICU at times for the first several years of their lives. They grew out of it eventually and now that they are adults, we still worry about recurrence especially if they get bronchitis and any lower respiratory infections It's happened a few times and inhalers are always at the ready. We still have the breathing treating apparatus in our pantry. Hopefully, we never use it again. I haven't kept up to date on what's happening in the pulmonary area Our kids had one of the top pediatric specialist in the field working close to us fortunately. Best wishes to your brother in finding the correct diagnosis and a solution ASAP.

Thanks researcher, they tried Albuterol inhalers for him during the work up last week at the lung lab, but he does not respond to those at all unfortunately, but the pulmonologist did give him two other inhalers with some special concoction that he hopes will help him, but the Doc did say he really doesn't want him undergoing any surgeries within the next few weeks while these inhalers have a chance to have at least a temporary effect and improving his lung function for concern about him coming off intubation after a significant surgery, which for an aortic aneurysm, surgery would likely entail heart-lung bypass as well.

However, from what I read last night, I really doubt if his Friday CT scan confirms his is still just 4.5cm diameter that they would even recommend surgery now, unless the two cardiac surgeons, both of whom are renowned experts at aortic aneurysm surgery and both are chief cardiac surgeons for their respective large Houston Medical Center hospitals, find some other complicating factor that might encourage them to recommend earlier than usual intervention.

At this point though, I'm not as concerned for any urgent heart surgery for him being required. the longer term for both the emphysema and aneurysm will definitely require careful management and close watching and no doubt some real changes in his level of robust exercise.

Have a good Sunday R,
Shannon